Learning to care for dying’s forgotten

Author

Chancellor's Professor of Medicine, Liberal Arts, and Philanthropy, Indiana University

Disclosure statement

Richard Gunderman does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

In most U.S. medical schools, lessons about death naturally focus on the care of the dying patient. But there is another group of people to whom health professionals need to learn to attend: the dying patient’s family and friends. In nearly every case, mortality’s collateral damage reaches more widely and endures longer than the patient’s travails, which cease at the moment of death.

Our preoccupation with the dying patient is not difficult to understand. For one thing, medical students are taught to put the patient first, which means others come second. Moreover, revenues and quality measures in health care revolve around the patient. As a result, grieving family and friends may languish in neglect, particularly in the weeks and months after a patient has died.

Consider these words of the daughter of a deceased elderly patient I know. “The whole time Dad was in the intensive care unit, the doctors and nurses seemed more interested in the machines than in us. When they talked to us, it was always because a medical decision had to be made. They never asked us how we were doing. After Dad died, we never heard from them or the hospital again.”

Such complaints are not rare, in part because death is such a ubiquitous fact of daily life. About 2.6 million Americans die every year, which works out to an average of 7,200 deaths per day and 300 deaths per hour. If people were dying at home, health professionals might have little opportunity to care for the grieving, but 63 percent of Americans die in hospitals and another 17 percent in chronic care facilities.

To help health professionals in training learn to care effectively for the grieving, it is important first to help them understand what it is like to grapple with the loss of a loved one. Many students are too young to have known such losses themselves, which can make it difficult to see death from the point of view of those left behind.

The role of literature

In my teaching of students at the Indiana University School of Medicine, I have found that some of the most important lessons on the care of the grieving lie not in medical textbooks but in great works of literature. By enabling us to experience grief vicariously, literature can enrich our moral imaginations, enabling us to care more compassionately.

One of literature’s greatest explorers of grief was the Russian writer, Anton Chekhov (1860-1904). He is typically ranked among the top playwrights in history, second only to Shakespeare, and he is equally highly regarded as a short story writer. Chekhov was not only a writer but also a practicing physician who cared for many dying patients over the course of his career.

In writing about death and loss, Chekhov knew his subject well, having grappled with the prospect of losing his own life and the deaths of loved ones. Just after completing medical school, he was diagnosed with the disease that would eventually take his life, tuberculosis. He also experienced a deep depression after the death of his brother Nikolay from the same disease in 1889.

Chekhov’s ‘Misery’

One of Chekhov’s masterworks is a 2,000-word gem entitled simply “Misery.” It tells the story of an old driver of a horse-drawn cab whose adult son has died just a week before. The cabbie wants “to tell how his son was taken ill, how he suffered, what he said before he died, how he died…He wants to describe the funeral…Yes, he has plenty to talk about.” But no one will listen.

Instead, the cabbie’s passengers think only of themselves. One hears the beginning of his story and asks what the son died of, but turns out to be preoccupied with his own affairs. His next fare, a trio of brazen young men, are so preoccupied by boasts of their revelry that they might as well be deaf, pausing only to berate the cabbie for driving too slowly.

In response to their complaints, the old man laments, “The only wife for me now is the damp earth… The grave that is!… Here my son’s dead and I am alive… It’s a strange thing, death has come in at the wrong door… Instead of coming for me it went for my son.” The contrast between the cabbie’s desolation and the carousers’ indifference heightens our appreciation for his melancholy.

In the end, the old man can find no one to talk to but his horse. “My son said good-bye to me… He went and died for no reason… Now, suppose you had a little colt, and you were mother to that little colt… And all at once that same little colt went and died… You’d be sorry, wouldn’t you?”

As the story concludes and the old man is carried away by his tale, the mare simply stands at his side, munching her hay.

Lessons for health professions students

The lessons for health professionals in training are unmistakable. Those of us who care for the dying must take care lest we become so preoccupied with our own affairs that we fail to hear what our patient’s loved ones need to tell us. We can get so distracted by the needs of the patient and the complex apparatus of contemporary care that we cease to attend to the grieving.

Like life itself, dying is better conceived as a journey than a destination, and it is an odyssey no less for the grieving than the deceased. The to-do lists of health professionals seem to be growing longer every year, and sometimes they loom so large in our field of view that we lose sight of those who need our care. Good literature reminds us not to mistake the record for the reality.

When students study Chekhov’s masterpiece for themselves, read it aloud to each other and take the time to plumb its depths in discussion, they gain a deeper appreciation for what it means for suffering human beings to carry around in their hearts an experience that they desperately need to share with someone else. Having felt it for themselves, the students can better recognize and respond to someone else in the same state.

Of course, health professionals are not the only ones capable of such compassion. Simply by virtue of our humanity, each of us shares the capacity to listen with genuine concern to the story of another human being in distress. We cannot undo this world’s misery, but each of us can lighten the load by serving as a sympathetic ear when the grieving need to share their stories.